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I don’t understand why more guys don’t do Zumba. It’s free or cheap live exotic dancing in a socially acceptable setting. No one expects the dance to look great. In fact, most of us hate those skinny bitches who do it all perfect and sexy. Fuck them. Since I’ve lost weight and can dance I think I might be one of them now. But I don’t care. It feels fucking good.

I do things in Zumba I’d never do in “real life.” I want to be watched, complimented, to be in the dance and then walk away. It’s all a practice. This one’s just more sexy. And currently mostly a reprieve from men seeking women. What a comedy that might be…

Today has been one of the most harrowing days of my life. I’m currently propped up on pillows on the couch staring, half-watched the tv. Mom’s falling asleep with Ellie in the chair, intermittently telling me random things. I’m trying to to type but it’s extremely difficult.

I went to the VA MH Council meeting this morning – no problems. I mean, I didn’t want to go and felt a bit out of sorts but no more than normal. I was running late but participated a lot and socialized with Jean & Howard and McCail after, walked down with everyone. I didn’t want to leave just yet, wasn’t sure about plans for the day, so I sat down in the lobby and journaled and charted. It’s something I’ve done before. I like having moments to myself, unrushed, and I like watching the volunteer interactions there at the front. I was starting to feel like my blood sugar was low, getting a bit weak and disoriented. I wrote it down. I was alarmed when I got up to leave and began stumbling to the right. My purse is heavy and I used it as a counterweight. I figured if I could just get some food I’d probably be just fine. I made it to the Valet, ate a glucose tab, made it to the Chipotle parking structure, thought things were fine. I worked on something on my phone before getting out of the car. But when I did I was still falling and stumbling to the right. I had a heck of a time trying to get up the broken escalator stairs. I was starting to freak out as I waited at Chipotle. It was hard to breathe but I wasn’t feeling anxious. I made it through the line leaning on the counter, could barely hold myself up. I held myself up on the table until I could sit down. A growing portion of the right side of my face felt pressure, then tingling, then burning. Lips sat in a pout. My right hand and arm were shaking so bad I couldn’t eat more than a few bites. It wasn’t like anything I’ve ever experienced and God in my head kept telling me, “GO.” I knew I wasn’t safe to drive. I drank half my soda, bagged the food, and called an Uber. Thankfully, there are many around me.

I was lucky to arrive at the hospital in an utter lull. I knew what would probably happen and did – Stroke Code. Front of the line, many nurses and doctors all around testing everything under the sun. I was having trouble speaking clearly, moving my right side purposefully, holding a steady gaze. I had no pain. I wasn’t anxious. I was actually quite peaceful. All I’d wanted to do that day was get my nails painted but that would have been after Chipotle. Lots of blood tests, urine tests, eventually an MRI.

They were much less interested when they figured out I’m a psych patient. Reminded me SO much of Adrienne and scared me, but I was exhausted – both from shaking so much and fear and from the Ativan they gave me to try to stop the shaking for the MRI. I couldn’t move if I’d tried in the MRI thanks to drugs but I couldn’t stop the twitching/shaking. It’s been like that sometimes in the past few weeks. I don’t know why. The MRI people were nice. The last doctor not so much. The nurse came in and said great that my mother was there and she could drive me home. Ummm, excuse me what? The doctor came in and said my MRI of my brain was perfect and there was nothing wrong. I looked up at him and said, “I’m gonna have to call ‘Bullshit’ on you for that one there but continue…” He gave no explanation of any of what happened or why, how to prevent it from happening again, what to do if it comes back. Nothing. He just left. Dickwad. It’s really hard to type this ‘cuz my fingers are unpredictably shaking and I’m mostly lying down ‘cuz I’m too weak to continue sitting.

I didn’t call my mom ‘til just before the MRI. I knew she was off work then and she’d want to know. I didn’t ask her to come or for anything. I specifically did not need people freaking out around me. Minus all the patient reports outside, that room was so peaceful. I prayed and watched and felt. I listened. I tried to write. It worked a little. There was no tv or music, just me. And that was okay. The Ativan toward the end made me really tired and I know it’s still making me tired now. I’m still getting waves of confusion and dizziness. I contacted Dr. M but I think he wasn’t there.

So what do I do now? I asked David and Soleil for cancellations tomorrow and David called me. After talking a little, I get to see Soleil tomorrow. He says if there’s nothing wrong with my brain then it’s all psych and I’m under a tremendous amount of stress. Don’t you throw that psychosomatic crap at me. When I’m stressed my pain gets worse. I don’t go ‘round fake believing I’m having a stroke. Too much work if nothing else. I told him I agree I’m under a shit ton of stress but ALSO that something neurologically is WRONG with me, STILL. Fluids don’t solve that. Neither does the Chinese food I ate after. Nor will a few hours’ sleep. Today, though, wasn’t stressful before this. I wanted to get my nails done!

I need help but God only knows what with. I’m SOOOO tired and sore. God save the queen. Here’s to a tomorrow sans weakness, shaking, falling over and pretty large needles. Here’s to a tomorrow that’s not so scary and more easy to understand. Please pray if you do. Thanks.

I really need some help disengaging from someone. This is not mean or bitchy or inappropriate. Currently it’s one of a last few options I have.

I have an ex-boyfriend who is currently making my life Hell. We have been broken up for over a year. He is obsessed. When we first broke up he stalked me, which he denies. I was afraid to do or go anywhere. I couldn’t post online or on social media or my blog (you’ll notice the sharp drop-off in content). His interest/obsession goes up and down. He recently went to rehab and I didn’t hear from him. It was so peaceful. But he came back with such a renewed obsession over me. He texts at all hours. He corners me at my group. Thankfully he hasn’t shown up at my house. He asks all sorts of questions. A few days ago, in response to me saying I do NOT want to be friends, he emailed me a suicide note, involving me in a PERT operation and tracking down doctors I don’t care to be involved with. He talked the PERT team down and went directly back to texting me. He’s trying to get me to let him go to a concert with some friends in a few weeks. No! I’ve tried to be nice but I finally just texted “LEAVE ME ALONE!” In true fashion, he replied with more than one text. It spills over into FB Messenger and email.

Since he came back from rehab and started pursuing me again, my anxiety and fear have been through the roof. I can’t pick up my phone without wondering if he’s waiting there for me. He’s not a bad guy. He’s just refusing to respect my boundaries and this MUST stop.

I DO NOT want to be friends.

I DO NOT want any contact. If there is an emergency, go through someone else.

I am NOT your “hope.” I will NEVER be your “hope.”

What you’re doing is HURTING me.

THIS IS NOT OKAY.

The last wave of obsession last year did not result in a restraining order because I was trying to be nice. I’m done being nice, but I only have so much energy. I ignore most of his texts and he actually said a few days ago, “U don’t have to assume that if you reply to any message I send you, I’m going to purse (sic) your heart anymore then I would normally.” SERIOUSLY?!! He keeps saying he’s giving my mom and I a bunch of money in a few months. I appreciate that, and I won’t claim we don’t need it, but you can’t buy us. (pause) I feel defeated and I can’t get away.

Any help or advice would be GREATLY appreciated. And yes, he is most likely reading this post.

I’m sitting here scanning a box of poetry from high school. It’s been under my bed for years, now next to the couch for months. Today is the 17th anniversary of when suicide became real to me. I wish it’d never happened. And the impact of this writing I only read a few lines here or there of gives me ultra goosebumps, makes me extremely nauseous, and if I was standing I’m sure I’d collapse. (and the tears…) (“If You Want Me To” by Ginny Owens)

I want to be right in the middle of the pain. I feel SO guilty. I LEFT her there. But she was me. And I can’t get her now. And she just screams and screams and screams. I can’t imagine having been my teachers when I wrote or spoke emotional truth. (stare…)

The music is very loud and I’m not sure what to do. Supposed to give a friend a ride to a group I’m leading tonight, at which I anticipate there to be some problems. I can’t be this person, or get into this person, and then do that. But not doing it validates that she doesn’t matter and never has. (head in hands…) (“Stronger” by Mandisa)

I wish I could see David today. I need to write too. Something specific. This is really best done somewhere with a garden. ;) I have to be strong enough to stand with her. I have to be strong enough for her, strong enough for me. Strong enough to let go.

It was the coolest thing. Usually I have trouble feeling connected, like I could be pressed hand to hand with you but not feel you – like there was a glass wall between us. But it wasn’t so at this yoga event I went to last Sunday. I knew the teacher and brought a few friends. It was literally us (the yoga people) and then the waves. And in between I lost the glass for awhile. I don’t know how and don’t care, but I found that girl from the other side wearing pink and saying, “PLEASE Don’t Leave Me.” This is her hand.
(Art from 9/12/17)

You know, I never thought it would be this way. Maybe because I never really thought. No one taught me what’s required to be a successful grownup, what it’s like to lose a love, to lose your life.

I’m sitting on the living room floor. Just switched from “Code Black” episodes to meditation music on the tv. I’m surrounded by the contents of what yesterday was my purse. I emptied it this morning and haven’t been able to figure out what to do with it. The air is on but I’m not hot. There isn’t always a happy ending.

I stayed home today. Got home super late from the ER with a friend. I didn’t have anything pressing today so I slept, kind of. Woke up to a call from another’s doctor. And the headache from the night before. It pressed on unto an 8, still moving. Took 5 prns and a few hours to even somewhat subside. So confused. The muscle weakness made an appearance today. I made a few videos. I did that the other day too. I haven’t been writing. I’ve been so scared. Too scared to pick up the pen or to write truth on the page. Or I want desperately to write but am too physically weak or tired or in too much pain to do it. Or I just can’t post what I need to say because the truth that’s eating the inside of me will eat through the outside of others. So much I want to tell David and I’m so scared. I really wish x was here but she’s not.

I’m so tired. I’m dancing the line between driving and acquiring a new bracelet. It holds no magic power though. I’m sick. I can and do help a lot of people, but I’m still sick. I feel so alone. Disconnect from those around me. Talk of needing to find a sustainable way of living long into the future without the help of others terrifies me. I’m trying to hold out ’til the 20th for my ECT with Dr. M. I got a confirmation call today about an appointment with a new neurologist on Monday that I thought had been cancelled. Honestly, I don’t have it in me to figure out food much less bring together all the facts this lady needs and communicate them in a way that makes sense to humans. (silent tears to piano music)

(long pause, visualization)

Was it meant to be this way? Always on the outside? Maybe one of my parents was successful living disconnected but made me with someone normal and I’m some fucked-up hybrid with all the skills a disconnected person needs to survive but an incredibly deep need, a longing, together to be. A polka-speckled universe. Cornflower blue. (pause)

I need to reschedule a meeting tomorrow so I can leave an appointment early to meet with a friend’s doctor, who is also my doctor occasionally and that of one of my other people, to talk about things she won’t agree with or understand and come up with a solution I don’t support at all. I had it all planned out – appointment in La Mesa, meeting at the cafe next door, picking lavender for the afternoon and then the OCD meeting. Maybe a visit in between. Now the appointment is in Miramar at a facility I need to powwow with but shouldn’t right now, in a place that embraces secrets as I hunt for my truth. My meeting will be replaced with a few hours of arguing. It may be followed by helping a person discharge, which will take the rest of the night. If not, the other person hopefully will be there by then. I take refuge in the quiet moments there. I talk to the staff and take in what my body calls love – acceptance, warmth, care and concern. We help each other and they’re proud of me. (staring)

I know what I need. And I can’t have it. Even if it was there I can’t do it right now. I had two somewhat regular gigs helping people that paid for my doctors. Now they’re gone and I have to solve for x. I have a little bit of savings and my mom is helping me, which is a trigger and a blessing. I surrender. I’m not sure what to do. I was already really struggling. Now the bumpers are down and I’m on my own. My therapist talks about finding a way to be self-sufficient one day. Right. I’ve no idea how.

I need to write but I need to sleep. And I’m craving candy. I get paranoid around this time of night and I keep thinking someone’s here, that someone’s watching me. I have to go. I’ll pray for you if you pray for me. Kinda like buy one get one free. ;) I really wish that I didn’t feel censored and that I could write and keep up with my charts. 6 years of my charts. I WANT to do them. They matter to me. I must sleep.

…I shouldn’t be in this group. I really don’t care. I feel angry. Angry. Angry.
Cog says anger is secondary to hurt or fear. Am I hurt or scared? Yes. Of what? Well… I feel hurt that I feel alone. Hurt that I can’t perceive most of the people around me as anything but idiots – people who can’t possibly understand me. Hurt that it’s my fault, that even after so many years of effort on personal growth, even after becoming a me I love, I don’t know how to teach other people how to “get” me or even understand on a base level what I say. I also feel hurt because people trust me enough to believe I’m okay. (slow, deep breath)

You know, I was just thinking Bambi is a terrible kids’ story or fairy tale. Then I caught the next thought that there should be more happily-ever-afters. But that’s not right. The fairy tales fuck us up. Maybe if there were more tragic kids’ stories expectations would lower and there would be less mental anguish.

I’ve been home about a half hour. I took an Uber from 1925 Elm, wherever that is. It has not been a good day.

I actually woke up when my alarm went off at 8:30am and started researching how Facebook Live works so I could share Women’s Day at the church with my friends. K- had texted letting me know T- was speaking because he knows my friend really likes her. I didn’t get an event up yesterday due to the NAMI Walk but I put it on my page and I wanted to be able to share it, especially with that friend. I told a few people at the NAMI Walk too.

My body hurt quite a bit today from missing my 5pm meds yesterday during a nap, but I got up and took a shower. I had laid out my clothes – a really cute black and white skirt and black top. I heard my mom getting dressed, which baffled me since she neither likes that church, or Women’s Day, OR ever wants to go there. She said she just hadn’t been feeling well. Bullshit. She’s spooked from almost dying and wants to go to church so somehow “going with” me, which means driving me, which means us being late on a day I’m specifically trying to capture everything, seems perfectly sane. Right. But my balance is off today and I’m running into walls and dropping everything and I still fucking hate everyone, carried over from yesterday. I forgot my purse and she was determined for me to eat yogurt instead of writing or changing the last few settings on my phone or figuring out how to tweak a camera accessory to work with my phone.

She was pissed that I’m cranky, for which there are more than a few reasons, some of which are physical. When we got to the church we were the ninth car, including -’s. “Where are the humans?” I said. We were eight minutes late so I thought maybe for once they started on time. The doors were closed. No one opened them. I let my mom in. When the few humans who were there noticed my mom was there they were all excited and happy to see her and saying how they’d been praying.

(make a smoothie, move to couch, turn on piano music)

Everyone was happy to see my mom. I’m glad they paid attention to her. I sat down. The service hadn’t started yet, which I find annoying. – came down from going over a song to hug my mom. He hugged me too. He looked old today and I said so. He said it looked like I got the notification. He gestured towards my outfit. I told him I had no idea what he was talking about. The other ladies for Women’s Day were in black & white. I’m assuming that’s what he meant but I still have no idea. I said I wish I had gotten the notice/notification for this day sooner so I could send it out to my people. He said no, that he didn’t want any more notices or people, he just wanted Michelle. I stared/glared at him confusedly. What the fuck was he talking about? I told him you can’t have Michelle without notices or reminders, and I bring people. Again with the no more notices, just Michelle. He said he was changing things, blah, blah, blah. I looked at him again and said, “Don’t make me hit you today. I am not in the mood.” I was not joking and there was no way what I said would have been taken that way. I don’t even remember the last thing he said to me. I just know it was in the same vein. I grabbed my purse, stood up, hands raised in surrender and said, “I can’t do this. I can’t. I can’t be here. I’m out.” And I stumbled my way down the aisle and out of the church. I guess I’ve stormed out of enough events in my life that no one bothers to follow, or text, or call. It’s not in the best of neighborhoods. I don’t like being followed, but I’m not sure what meaning to attach to being ignored.

I don’t know what – was referring to, or what he meant. I certainly don’t understand. It was his notice I was talking about. HE sent it to me. He calls me his “new evangelist.” While I don’t like that word, it’s a type of outreach. What is Michelle without networking, without outreach? Really? Go ahead and define me without anything related to connecting people to other people or resources, without some component of organization or information, without sharing, or teaching. I dare ya. Spreading the Good News, or sharing the Gospel, is NETWORKING. I can’t not be me. And I don’t intend to.

I was aware as I left that I didn’t have my journal but I didn’t dare turn back to get it. I walked. I had my purse and my phone. I walked up 49th to Federal, down to Euclid and called an Uber at Elm. I knew it wasn’t safe for me to be walking there. I don’t fit in. I didn’t care. If someone had tried to mug me I would have just handed them my purse. It’s not worth a fight. I’m dressed too nicely on a Sunday morning to be a prostitute and I’m white so that rules some things out. On Federal a police car passed me, turned around and drove past me again. He did this several times. I was paying attention to my surroundings as I walked, but also to my body. Yesterday and today my face has been tense and twitchy, but I noticed something new today. As I walked, my hands were open static, palms forward. They just stayed there. My fingers weren’t moving. My soul was frozen. I give up. I stopped to smell red and yellow roses, said hello to the homeless people as I passed on the street. I smelled the two types of jasmine, picked one. I stopped to stand under the shade of a few trees. I just wanted to write but I had no paper. I needed a safe place to stop.

I wish I had wanted to die. Precarious situation. I’m used to feeling awful and wanting to die. It brings relief and I’m okay. But I didn’t want to die today. I just couldn’t stop the feeling. It’s all over. Nowhere to go from here. Dr. M said we can reset the inside of my brain but not my life. Sometimes I think it’s better to feel worse than good. At least in death there is hope. In this, it’s just endless bullshit followed up by a helping of confusion and then some more shit on the side. Why try to feel or get better if being better hurts worse?

There were no words in the UberPool. Driver barely spoke English. Before he arrived I looked down at my phone and my mom had sent me a text message. It read, “Don’t let the Devil keep you from being in church this am. Come back in, please.” I replied, “You don’t know what you’re talking about. I’ll see you later.” I was so hurt. How dare she? Sure. I use everything I have in me to get to a service I’m doing something special for, am extremely triggered and offended by something someone important says to me, leave so I don’t scream or hit someone or say something their delicate ears can’t handle and somehow it’s the DEVIL keeping me out of the church? Riiiiiiiiight. I’m in bed with Satan and my goal is to fuck up the church and cause a scene wherever I go just to get in the way. I’m sorry I never realized the beauty of this plan. I suppose all the people I bring and media I share are Satan-derived too. I earn Hell-points for everyone I bring to church or convert and extra for each time I get upset and leave. (close and roll my eyes) Why even try?

M’s coming over in a half hour to work on folders. I don’t care to see anyone. I don’t want to work. I hate the new labels. I need to return the proof for the table runner. I need a nap.I think I’m getting sick too and my doctor isn’t returning my message. (sigh) Mom called to say she’s bringing food home. I JUST WANT TO WRITE AND SLEEP.

I am SOOO ANGRY. And I slept 22.5 hours last night so I have plenty of energy to direct that way. I managed at least to scream “FUCK YOU!” after hanging up the phone.

I called the Coordinated Care Initiative line for the State of California. They are supposed to handle the conversion to and exemption of dual eligibles (those of us eligible for both Medicare and MediCal) from the new managed care requirements in this lovely state. The only easy way out of this requirement is to have HIV/AIDS or be an American Indian. I’m tempted.

What am I talking about?

Medicare is the health insurance offered to most seniors and people on disability (after 2 years). It’s hard to find a specialist that takes it but there are many useful hospitals that take it for medical and psych. There is a 190 day inpatient limit for psych days at a free-standing hospital. (When I’m better I shall be tackling this.)

MediCal is California’s version of Medicaid (federal health program for poor people.) It is near impossible to find a skilled clinician, if they give you a doctor at all instead of an intern, on MediCal. It is a good net if you have non-specific or only emergency medical needs but if you have chronic medical conditions and/or psych needs and have only MediCal, you’re screwed. In some clinics it’s better to be completely uninsured and pay a sliding-scale amount and see a good doctor. Having MediCal (and Medicare for that matter) also usually exempt you from prescription discount programs offered by manufacturers, even though formularies are scant.

If you have both Medicare and MediCal, MediCal won’t pay for any fee that is above what Medicare determines they should be paying your clinician – no matter how far below industry standard or just human dignitiy would allow. Yet our great state of CA decided that being covered fully by both insurances was just too much. In Jan 2014 they started a “demonstration period” of what’s called the “Coordinated Care Initiative” and started forcing people into either CalMediConnect (a program that pushes you into an HMO that rolls your Medicare and MediCal into one, SIGNIFICANTLY limiting your benefits) or whatever Medicare you already have plus being forced into a MediCal Managed Care Plan HMO. I opted out of this “demonstration” in the very complicated and hard to find way they barely provided as I watched the change mess up countless lives.

Then a few weeks ago I got a similar packet in the mail. I did some research online finding that the demonstration period ended Jan 2017 but no info on what the outcome was, whether it saved money, links to the actions taken by our government to expand or make it permanent. Nothing. Someone from CCI called to enroll me in a plan Wednesday since I hadn’t mailed in the form. I explained that I had no intention of joining an HMO because it would complicate and jeopardize my care and she told me where to find an exemption form. But the form says it’s only for people who don’t have another insurance. So I called back today.

I won’t lie. I’d be happy if this man’s head exploded and a MediCal doctor was left to piece it back together. He tried to convince me I wasn’t being forced into an HMO. FALSE. Then he told me I’d qualify for a non-medical exemption but failed to mention the American Indian or HIV/AIDS part right away. I asked about the demonstration period and where I could find information. “We’re just the enrollment center. That’s the state… That’s not my department. That’s not my issue,” he said. He kept coming back to trying to tell me my doctors wouldn’t be affected by joining a Managed Care Plan. Then he went and said it. “Well, if the only reason your doctor won’t see you is because of the extra time it takes to do MediCal paperwork, is that really a doctor you want to be seeing?”

YES!!!

How much more of a fucking idiot could he be?!! Just how they want them at the CCI office I bet. I told him, “YES!” Those are the doctors who have time to hear what’s going on, who listen to my situation, who have experience and choose to actually get paid for it instead of working for free or just supervising 10 interns at a time as they run around the office “practicing” medicine. FUCK YES.

Aside from just being rich, Medi-Medi with fee-for-service MediCal was the best insurance one could get. MediCal pays my monthly Medicare premium, automatically qualifies me for Part D Extra Help (making my generic drugs about $1 and my brand name drugs about $3), and picks up the copay at any doctor I see or prevents them from charging me one. I’m not looking forward to this new world and what will be denied or changed. At least I can blame screaming “FUCK YOU” at them on being crazy.

TIP:I run into doctors who take Medicare but not MediCal and if you tell them you have both they say they can’t see you as a patient because they don’t take MediCal and it’s considered fraud to charge me my Medicare 20% or anything else.WRONG
Usually I just call back and don’t tell them I have MediCal. Then they take me but I guess it’s still fraud.
I learned this from HICAP when I called a few days ago: It’s not fraud if they give me a statement in writing that they don’t accept or bill MediCal and I agree to this in advance of treatment. Sweet! I’m on the search for a preformatted statement like this and will post it when I find it. Then I can blanket the city and my group with this new information. I even had a girl turned down by a Sharp Urgent Care the other day because they told her the same thing. I do have ins at Sharp…

I’m sitting in the VA parking lot. The potluck was tonight and I pulled it off well, got a special award from Libby. I cleaned up and socialized, kind of. I feel weak and dizzy and faint, like before I passed out yesterday. I walked the stairs anyway. I want that star.

(rest on my fist the space between my eyes)
Mom didn’t come.

I missed my opportunity. I fucked up. This is my fault. I need and wanted ECT. In the time I could have done it and recovered I tried something else to appease my doctor, which went horribly wrong. Now I’m in a med change. She’ll want to know if it’s working tomorrow.

Is my new med helping? Is it better or worse? I’m not sure how to answer that. Before I was severely depressed and non-functional. I wanted and needed ECT and had time to do it but needed help with logistics. Now I don’t know what I am. My best guess would be rapid cycling mixed episode with mild psychotic features and marked memory impairment. I go back and forth from bitter to rage to desperation to confusion – lots of confusion – and back. The period I’m not supposed to have now comes for about 3 days every week and a half. I’m bingeing a lot, making myself ill, impulsively maxing out my credit cards. I shut down completely in private and in public at inopportune times. I’m isolating from everyone, including D-. Fighting with Mom every day. Is that better or worse?

I missed the opportunity. They don’t come often. Today I went back to work for F-. I’m expected at group and outreach events and appointments. Because my moments are split I don’t get to pick ECT anymore. I don’t get to do what I know works for me ‘cuz I’m feeling now. Fuck.

(curled over, feel my heart beat on my skin)

I’m cold.
What do I do now?

Just keep working.

I didn’t matter enough to fix. :(
Not my turn.

3 – When Daddy hides the roller skates, run run away.
No like Daddy clip his fingernails.
Ice live in penguins, Mommy.

I get to see J- on Thursday. I don’t know how I’m going to pay for it but I want my life back. I NEED me back.

Today I went to church and lunch with my mom and her friend. I fell asleep after, picked up a migraine and forgot what I wanted to work on. I’m not doing well. I’ve been quite depressed for some time. I wanted to rejoin the ranks of ECT but tried an intensive outpatient program instead. That ended terribly. Now I’m trying to figure out what to do, only I don’t have the mind to do it. Dissociation has taken on a life of its own. I’m losing time. I can’t follow what’s happening. I’m sending freaked out emails to my therapist that later I have no or little recollection of. I started a new med that I’m pretty sure is either making my symptoms worse or holding off the small sanity breaks I usually get. I’m usually a shark when it comes to managing money and two months in a row now I’ve forgotten to pay bills. I can’t keep up with my work, often forget I’m even supposed to be doing it. I go to my group and do the bare bones. I’ve been somewhat honest about the fact that I’m struggling but I don’t share in group or when I’m willing there isn’t time. I avoid it altogether most times since the feedback I get is often silence or replies that are only vaguely relevant. My friends express concern and ask if there’s anything they can do to help. I know if I told them something they would do it, but I don’t know what that is. I’ve pulled away from almost everyone. I don’t know what to do. I go in and out of wanting to kill myself. It’s not a likely scenario considering I don’t actually want to be dead and I can’t undie if I don’t like it. Soleil also pointed out recently that I’m always moving and there’s no movement in death. That would certainly be a problem.

I think it was last month that I had packed a bag and left it in the car should I want or need to go inpatient. I’ve since unpacked it. I did tell my mom after a bit and I told her I was considering more ECT or an IOP. She didn’t really seem surprised or upset, or anything for that matter. When I went into IOP all that mattered to her was that I got my work done, which I didn’t. Ending the IOP was traumatic and I was upset for days. I couldn’t tell her what was happening and when I was finally going to she said something so offensive about a few of my friends that I wouldn’t. We got in a huge unrelated screaming fight a few nights ago. Today she said I wasn’t making sense. I’ll give her that. I tried very hard this evening to talk to her. I told her I’m losing time. I spent all my effort trying to explain what that means, what it’s like for me. (stare off into space) She picked up the remote and said, “What do you want to watch?” There was no response or discussion.

My therapist is doing his damndest, which I have to give him credit for. We’re in rough waters and even I don’t believe in me. For some reason he does. I feel horribly guilty for telling him the truth about what’s happening to me. I don’t want to be the girl who’s always in crisis. I mentioned something recently about working with and educating the police and he straight up laughed, said he would pay to see that, take the whole day off work. I don’t blame him. He’s never seen the side of me that can do that, just the one that’s freaking out.

I don’t know what there is to be scared of. I am so blessed. I live in a safe home with my mom who loves me. I have the most incredible team of providers I couldn’t even dream up and a steady source of income. On top of that, I have a God who loves and protects me no matter what I do and a group that’s got my back. I can let go but I’m afraid to lose control. I’m afraid of losing who I am.

I had surgery on my tongue today to remove a large bump/lesion. I am grateful for my doctor and awesome staff. Also, my mom rocks. She took the day off to look after me. I haven’t taken any PRNs yet but I slept most of the day and am still tired. My mouth hurts but I feel so calm and nothing bothers me. I know it’s the drugs in my system but I don’t care. My head and my mouth hurt. Don’t really care. Struggle to keep my eyes open. Nope, don’t care. This is a blessing. Thank you, God. I must sleep now. I’m falling over. I have to go to my program tomorrow, in 4 hours, and I can’t be late. I’ll tell you about that some other time.

I’m sitting here watching the Presidential debate. I feel so disheartened. I back Hillary Clinton. Donald Trump as a President would literally kill me. But that’s not the issue for me. The issue is pride.

I remember the last two elections. I followed them closely and supported Obama. I posted on Facebook and put up yard signs. I have an Obama sound card. I felt proud to be an American. I felt involved and I felt hope. My viewpoint mattered and my response was wanted. Not so much now. I even went to local candidate events.

(listen to them talk about entitlements – VERY important to me)

At least for a moment there was involvement and acknowledgment of people like me by Bernie, a chance to rise and make a change. But it’s gone now.

I don’t post this as political commentary about a specific candidate but as a WTF about this election. I want to be able to trust the leaders of my country. I don’t want to be ashamed of my leaders or avoid the topic or change the channel each time it comes on. I want a candidate to rise up with.

What’s happening now? I’m sitting in my room. I want to run away but I’m here. I feel my heartbeat where my butt touches the cushion and heavy in my chest. Most of my toes, the side of my left hand on the page. It’s hard to raise my gaze. “I want to die” is on my mind. It’s just a phrase. I’m not getting out.

God sends encouragement just before I need it. And I’ve yet to pair the thought that something bad is about to happen with the joy. Thank God for that.

I just stared at him. All I could say was, “Wow.” And I walked away. (prolonged stare…)

After church today I stayed to talk to Matt about the choir, to ask what the fuck is going on. He seemed confused by the inquiry. The choir is chaos. I don’t get the details because I’m on the outskirts but I joined the choir in 2013 when God told me to. I didn’t go for the church or the pastor. I went to sing and to fellowship with Diane. I like the people. The goings on sometimes are questionable but only because I’m not on the inside. I come to most rehearsals. I show up for church. In the past I was able to sing a few pieces for special music. But this year everything changed. There was unspoken drama that caused Diane to quit and many other members to leave the church. I have no details. Bobby took over the choir temporarily. I like him as a human but choir practice sucked. Then a few weeks ago he quit too. Again, I have no details. Richard stepped in to direct temporarily though he lacks any ability to do it and we follow Helen and guess. Sometimes there’s rehearsal. Sometimes there isn’t. When there is we just go over hymns to sing and mark our books. Different choir members shout out what we need to do, direct from the loft. “Special music,” aka the music we sing as a highlight once a month, has become a joke. Even prayer time is lacking. More people keep leaving the church.

At the last rehearsal I went to two weeks ago I asked if in one of the ones I missed if there was a State of the Choir conversation, what was going on in regards to finding a new director and fast. No one seemed to know. They said maybe Matt was working on it. When I asked Richard for information he said he didn’t know. I said, “But you’re in charge.” Silence. The choir concurred that no one had any idea how to even go about looking for a music director or where to find one. I said I do. At least I have contacts who do and would probably help.

At church today Bonnie said she hopes I’m there on Thursday. I said I don’t know, that the situation is making me really angry. I don’t even get texts anymore about whether there’s rehearsal or not. She tried to make it better saying we’re working together and blah blah it will be better soon. It’s not okay. It’s not okay. Music is what ties the service together and speaks to souls. It matters.

After the service I went to talk to Matt. I asked what the info was on finding a new choir director and told him how unhappy I am at the current situation. Richard’s a great guy but he’s NOT a music director at all. Now is when we should be buckling down and starting to work on Christmas stuff. What we need is asking the impossible – someone who is skilled/talented at music and directing, experienced with hymns and traditional music, willing to give at least 2 half days a week, plan and execute holiday performances, coordinate special music, get along with everyone and do it all for free. (listen to solo piano on Pandora)

Matt seemed to have no idea what I was talking about in regards to the choir being in shambles. He said Richard was directing. I’m aware of that. I wanted to know who is looking for a new director, who is working on this. He wasn’t concerned. He said he’s not going to bring in a performer or hire a music director. He said he’s not like most churches. I asked if that meant he was expecting someone from our congregation to just stand up and do it. He kept talking about God’s will and that whatever God wants will happen. I told him I believe in God’s will but I also believe I have to DO SOMETHING too. I told him I’ve been in this choir for several years. I didn’t come to Trinity for the church or the sermons or the people. I came because God told me to come and sing with Diane. And I did. And I put up with a lot of bullshit to stay in it. Now she’s gone and Bobby’s gone and the choir is a mess. I can’t tolerate much more of this. Music is important. It’s connecting. It hurts to watch the program fall apart and the people do nothing. I’m so angry.

That’s when he said it. I thought maybe he would say if I felt so strongly about the program I should step up and lead, but he didn’t. He said Richard is the director for now and that he won’t be appointing anyone to replace him without really getting to know the person over time. He said, “Maybe this is God calling you to go somewhere else…”

I just stood there staring at him. We didn’t say anything. My breath stopped and my eyes squinted. Finally I said, “I’m just gonna leave that with a ‘Wow.’” I walked away without words. I grabbed my purse, looked at the choir loft, thought about the post-it on my hymnal from the first time I was there. Then I left.

I wanted to leave, to hide, go somewhere else but I’m still home. I don’t understand. I think I was just asked to leave my church. It’s not a horrific idea but I don’t get it. I bring people in. My friends like that church. Matt helps them when they need it. My mom gets along well with the people. They have free donut holes. It’s by my house. And it used to have people in it I called friend. They’ve never instituted any of my ideas or requests and they know very little about me, but they care. I don’t want this to interfere with the journeys of my friends. But it interferes with me. Not something I expected.

I don’t know what happens now, just that I feel very alone. Maybe it finally is time to change churches. I wish it didn’t have to be this way.

You may have heard there was another cop shooting this week where the cops killed an unarmed black man. Seems to be a fad these days. I hear them on the radio and they are upsetting but they are far from me, beyond my ability to affect or be a part of. But this one was 2 miles from my house at a taco shop between the vet I go to and the place I buy frozen yogurt. AND this person wasn’t just black, he was crazy.

(*For those of you who take offense to the word “crazy” or believe it promotes stigma, I don’t care. I am proud to be crazy myself and I use the word openly. The term “mentally ill” makes me MUCH more uncomfortable.)

That said, this man was crazy. His sister called for help, made it clear that her brother was not okay. After almost an hour a non-PERT team was sent to the scene and killed him. You can read the details in this article. The officer with extensive psych training responded appropriately by tazing the man. The other one shot the guy. He’s dead.

Immediately the Black Lives Matter movement and NAACP stepped in. Churches, vigils, protests, marches. Only last night did the events become violent. More is planned for tonight and something big on Saturday, though I don’t know what they are or how to find out the details.

I WANT TO BE INVOLVED. My mom says to stay away from all of that. My contact with the police replied somewhat cryptically to my response. My basic interpretation is, “Stay away from that, Michelle.” There are complaints about violence and I hear people look down on those acting out, but I don’t blame them. What else is there to do? What channel is there for expressing extreme anger and distress? for requesting help and change from a virtually impenetrable source? Of course there will be violence eventually. And it’s the only thing that proves effective right now. It makes the news, gets the word out, releases emotion and sometimes causes officials to actually do something they want or need done, like release information.

(watch live feed of press conference and release of video of shooting, approx 40 mins)

Wow. I’m really glad I live in a city that’s so coordinated and connected and prepared (somewhat) for things like this. The distress of the police chief came through the screen. He did a great job. I’m grateful someone asked about PERT and why PERT did not respond… (watch more, read more)

It’s upsetting to me that cops kill people. I try to avoid them at all costs when I’m not at a PERT Academy or similar event. They scare me. They kill people like me for being me. I’m upset that there is way more focus on the man being black than being in a mental health crisis. I’m upset that there’s no rallying behind the family by a national organization like NAMI or DBSA. I’m upset that only today, 3 days after the shooting, did anything related to the shooting show up on my support group FB group. I don’t watch the news but this is unavoidable. Someone heard SOMETHING. Is no one else upset? Does no one else also believe that crazy lives matter too? This event has implications for consumers, family & friends, and the community at large but I’ve receive no calls. I’ve gotten no emails from organizations locally stepping out saying what happened was if not wrong at least really fucked up and didn’t have to end that way. No condolence emails. No vigil notifications. I can’t even seem to find information on the civil rights-related events planned or happening. It’s like it doesn’t exist.

Meanwhile, I sit here wondering what to do. I want to be a part of change. I want to be able to take some action, to make a difference. That doesn’t happen on Facebook or lying on the floor. I don’t want to be one of the people who just stands by, who places their own safety above the greater good. I get mad at my mom for avoiding meaningful rallies and events because of danger. I don’t understand how she lived through the 60s and 70s and never joined a protest. It makes me angry. I walk toward the fire for things I believe in. I’m not afraid to die. But in this case I don’t know how. I don’t want to get injured at a protest. I don’t even know where to find them. I don’t want to miss out. I don’t want to be aloof or to put myself first. I want IN. How do I get there?

All the time I spend networking and talking to people, forming alliances and gathering info is my greatest addition to change, aside from crisis intervention. Here somehow that doesn’t feel adequate. It’s not enough. And no complaint form or grievance or blog post will fix that. I feel really sad.

What do I tell my consumers to try and remember to do or not do while in crisis to not get shot? (aside from the ERP list)

What do I tell them when they freak out even more when someone does call because now they’re terrified of being shot too just for being in crisis?

What do I tell my family & friends people when they want to know if it’s still safe to call 911 and hope for PERT?

What do I tell them to make this okay?

What do I tell all the sisters and relatives who now don’t want to ask for help because they don’t want to kill their loved one?

For some reason my people don’t seem upset. I’m not getting FB posts or phone calls or texts. I’m not even getting concern from people about the 2 deaths at a popular independent living this week – murder/suicide. Is everyone asleep?

I don’t know. I just want what I do to matter regarding this. I’m not a sit on the sidelines type of person. I’m crazy and I want change. I want to matter. I want to feel safe in my home and my city. I want to be me.

I run into this issue often. People can’t answer a FUCKING question. It’s not that they even give me a reply vaguely related to what I asked. It’s COMPLETELY unrelated. What the fuck?! ANSWER THE GOD-DAMNED QUESTION!

Now, I know I’m more irritable than usual lately but this bugs me on my sanest day. These people aren’t stupid and I know they’ve mastered the skill of answering at least a little or they wouldn’t have passed kindergarten. Can you just imagine this scenario?

Teacher: What is 2+2?
Student: My favorite day is Thursday.

The student wouldn’t pass. Ever. So I know they can do it. Then WHY the Hell not? If you don’t understand the question, say that. If you don’t know the answer, say that. If you don’t want to answer for whatever reason, either say that or just say nothing. But for God’s sake, and my own, do NOT make a pattern of not answering what you’re asked. It’s just rude. I understand it when people are confused or having some episode of illness but not all the time. It’s simple.

Answer the question. I may be upset by your answer but not HALF as downright angry as I am right now. And then you won’t have to deal with my wrath. Now wouldn’t that be nice? Think about it. I dare ya.

I am SO blessed. I’m sitting on the couch with my dog cuddled up next to me. Mom is sewing as we watch Big Bang Theory. It’s some sort of dream.

I woke up this morning. Yep. I wandered around my house most of the day confused and anxious, freaking out and shutting down. I finally found the guts to write to my brother’s step-dad about what I want to do with his body. I sent the message over Facebook and went through a basket I haven’t touched in ages while watching NCIS. My niece’s mom contacted me for the first time. Then the step-dad responded in agreement and my fear fell away. I could BREATHE. What a blessing. I also got to chat with a friend from Level 1. Thinking of her lifted my spirits.

In the afternoon God told me to go cut lavender. So I found my scissors and went 56 minutes before sunset. I prayed for God to sit with me as I cut the flowers, to bless me and the people who grew them, to heal the people who will receive them. I asked Him to let me just be. I walked and sat and cut. I listened to the neighbors. I watched the families interact. There was a butterfly that flew by. I say automatically, “Hi, God.” Sometimes instead I say, “Hi, Dad.” I pay attention to them and to the flowers.

As I sat on the ground collecting purple flowers I heard a buzzing. It was a hummingbird. It flitted around the plant beside me then came over to the one I was working on. I stayed still and watched. It backed up and stared at me. Then it moved forward, forward more. We were face to face and I didn’t move. God sent me a hummingbird. It hovered long enough to hold my attention. When it was ready it flew away. I praised God for the day.

I met a neighbor whose mom is a patient at Mesa Vista. I shared DBSA with her. I really hope this one house’s inhabitants show up soon. I REALLY want to cut the flowers in front of it. Mom wanted a bun taco from Del Taco so I drove through. I hadn’t been to that Del Taco or through that drive thru since November 16, 2001, when I left my dying father. The lady who gave me my food at the drive thru looked different. She didn’t fit the image of a fast food worker. I told her she looked too skilled to be working at a Del Taco. She said her husband owns the franchise and she fills in where needed. I told her about not being there since 2001. She told me her daughter, who was 26, died three years ago. She also told me about her mother with Alzheimer’s and their struggles. I offered resources and gave her lavender. She was amazing. She said to come back more often. I don’t know her name and I don’t like the food, but I’m pretty sure I’ll go back to see her.

I listened to Snap Judgment on the way home, bought bananas, made a smoothie and walked into my living room to Mom sewing. I don’t know what inspired her to do that (she is AWESOME) but I’m glad she’s back in her element.

I am so blessed. I’m exhausted but joy fills my face – and my soul, and my toes. Hallelujah blessed. Yesterday and the day before we SO awful. And today I’m okay. Held by God. I’m even back in touch with my old ballet teacher, who has been in the wind for years, and my 8th grade history teacher. They both appeared like the butterflies and the hummingbird.

Look for the small and so meaningful blessings in life. A hummingbird shouldn’t have to stare me in the face for God to grab my attention, yet today it did and it worked. God is with me. Don’t let me forget that.

Trying to write something difficult… So I went shopping… and put stickers on my keyboard. I was sitting on the floor where I usually sit but the smell of dog urine on the rug and the drama of Cedar Cove on the tv have pushed me to the kitchen. I don’t know what to say…

(eat cereal and scan a drawing to distract)

My brother died last week. Well, almost 2 weeks ago. I found out last week I am the legal next of kin. I’ve been asked to sign over my rights but that’s not what I want. I’m very angry about some of the things that happened, and worried about the effect of my actions. “Family” can be such a nasty thing.

I also found out on Thursday (yesterday) that if I want to continue on in Phoenix Rising training I have to do it in Colorado or Vermont, that I can’t do Level 2 here. It’s what I’ve been looking forward to for months. I already didn’t know how I was going to pay for Levels 2 & 3. I didn’t anticipate adding travel in so soon or needing to be stable enough to travel on my own by November. I can’t keep up. I don’t know what to do.

My drawing this week said I’m not alone and that I’m not running. I feel myself not running. In fact, the world seems to be standing still. But I do feel alone. Very. I wish I could feel that moment of wisdom where I wasn’t.

Today I got an email from the management of a choir I sing with. They had talked about us singing at some event on the Midway but never sent out info. Now it turns out they’re giving us a month’s notice to commit to two days of rehearsal in a row followed by the show the third day. This would be great except I just bought concert tickets for a whole group on the first day and I have a support group event the next. Fuck. I don’t understand. It’s Comic-Con. Why can’t one of those superheroes come and rescue me?

(sigh)
I feel like I’m bitching about stupid problems no one needs to hear about anyway. Except for I need to hear about them and I’m eerily quiet. I’m doing the best that I can. I really am. I’m taking my meds, going to my appointments and therapy. I see myself stronger and more grounded than years ago. I know what I want and I’m not afraid to stand in the fire for what’s right, even if I get burned. I’m just learning what it feels like to rely on faith.

I ran over the large remnant of a blown-out tire on the freeway Wednesday evening. I didn’t notice a problem until last night when I stopped to pop the bumper back into place. I told my mom and she discovered it has torn that piece under the car that stops stuff on the road from flying up into the important parts of your car. Lovely. She duct taped it. I think it needs more than tape but she won’t let me file another insurance claim. Last month I scratched a car in a parking lot. For the trivial nature of it it was quite the trial.

I miss how life used to be. I know it sucked but I miss having friends. I miss hanging out and liking each other and staying up all night at a coffee house and having pancakes in the morning. Now most of us have gone our separate ways or are busy or crazy or, let’s face it, dead. When I needed someone to sit with me this week to figure out my brother’s arrangements I literally didn’t know who to call. I went through my phone and finally settled on getting resources from some people I’m on a board with. I cried almost the whole day. Then I sucked it up and helped a friend. I didn’t want to lead a group on Monday but I took one when needed. And when I needed to pass it off at the break because I couldn’t take anymore there was no one there to take the clipboard. The people who used to work crises with me are not there anymore. My transition committee didn’t even show up to the last meeting – not a single one of them. (pause)

Maybe my relationships are affected by my place in the group, but I know that’s not all of it. (fall asleep on the floor) I’m friendly but distant. I don’t share a lot with people, though they share so much with me. I don’t show up to social events I’m invited to, most of the time because I am legitimately tired. And somehow, thanks to -, everyone thinks I call PERT or force people to go to the hospital whenever there’s a crisis, which isn’t true. I miss having friends.

I really want to complete the Phoenix Rising training. And I want my family not to hate me when I have the guts to make my decision regarding my brother known (probably tomorrow). I don’t think doing my best is wrong. It’s just hard sometimes.